Losing Greg: A Dementia Story

When Greg Kelly was diagnosed with early-onset dementia at 59, it turned his family's lives upside down. This report follows his exploration of a Danish dementia village, as he seeks the best care solutions.

For 40 years Greg worked in finance, but now the weekly grocery shop is too much for him. "This is a terminal illness, with an average of 6-8 years", he explains. With limited care options in Australia for young dementia patients, Greg heads to Denmark, where €63m has been spent developing new approaches to the disease. Can he find independence in Svendborg Dementia Village?

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[satpurush]

Whoever created this centre in Denmark for dementia patients.... I thank him/her or them with all my heart for providing such an exquisite service !

[chellegriggs]

My husband was diagnosed with Lewy Body Dementia two years ago. He was a pilot, loved to go on very long and strenuous hikes, loved traveling and doing very active things. Now he can't find the bedroom, go to the bathroom by himself, he has major hallucinations, can't dress himself. I'm his 24/7 caregiver. He watched his first wife die of leukemia, loved her till end, took amazing care of her (they were together 37 years). Then he met me. We have been together 12 years. He has given me a wonderful life. I will NEVER put him in a nursing home. I'm beside him every second of the day (he is hallucinating right now). I will be by his side until the end. Lewy Body Dementia (all dementias) is a horrible disease. I have also (in the last ten months) been taking care of my elderly mother and father...I promised them like I promised my husband I would never give up on taking care of them. Thank you for your story. Much respect 💔

[angelaandel]

As a therapist in the US, it brings tears to my eyes to watch this. I wish there were more places like this. A peaceful environment is everything to some one under so much stress and anxiety from this illness. The creators of this are angels!!

[debraderoos]

Thank you for sharing this. I worked in a nursing home when I was in my early 20's. Many of the people had dementia. I would go home crying every night. Then I decided the best way to deal with it was to come into work singing. That's what I did everyday. I walked around the hallways singing as loud as I wanted too. The patients loved it. It brought joy to them and to me. We need the dignity that is shown to these people in Denmark right here in America. Can you imagine that? Money does not defined the care you get. It shouldn't. It's about the dignity of life.

[Alec-Al]

Wow! He passed away only 3-4 years after his diagnosis. It's good through that he lived and worked and provided for himself and his wife a home, and that he did enjoy much of his life and that he had someone there to be there for him until the end. That's a big blessing for someone to have someone else who cares and will be there for the person until the end comes. Many folks have no one, and eventually ends up in a nursing home all alone and no one comes to visit them. So so sad.

[Anth]

I'm at beginning stages of vascular Dementia and it's very frustrating, I've completely shut down and by that I mean wanting to see friends workout for that I was so addicted to working out 2 hours a day nor do I socialize because I get so so frustrated when explaining what it is or the things I do. I'm very aware of things I do and it really gets to me from leaving my wash in the washing machine forgetting my groceries in my car finding them the evening or even next morning. And when my daughter forgets that I have it and makes me feel as if I don't listen to her because I forget so much. I was watching this and thought it was so interesting and was scrolling on the comments and Damm I've seen it already 11 months ago and even commented on it and I had no idea, Having this is very frustrating but I just keep my faith with God and I truly believe he has a plan for me🙏❤️

[maryannanderson]

My husband had Alzheimer's and I wanted to be with him, so I planned to sell our home and move with him into a care facility. His doctor told me in the strongest terms possible that this was a very bad idea. He said that if my husband died, I would be homeless because I did not have Alzheimer's and therefore, I would not be allowed to stay there by myself. So I would lose my husband and my home at the same time. Fortunately, I listened to him and followed his advice, and I am extremely glad I did because my husband has been dead for 14 years and I cannot imagine where I would now be living if I had sold our home.

[mockingintercessor]

He's not slowly turning into another person. He's vanishing. One of the worst things that happens to you once a loved one you have cared for, and watched decline over time, is the relief you feel once it's over. You miss them, but they were not 'them' for a long time and they're finally free...but so are you. And it's hard to forgive yourself for the relief.

[cazw]

My mum had dementia. We have nothing like this in the UK. Every country should have facilities like this. 🇬🇧

[Kaileegirl]

Janet your love for Greg shone through so brightly
Greg was a very lucky man to have you by his side
I'm so sorry for your loss
I hope you are doing ok
RIP Greg

[mandkqatar]

Such a tragically sad disease. Watching my mum's decline over 7 yrs before passing - truly heartbreaking. Passing was a bitter-sweet blessing.

[patriciabilinkas]

My dad had this. His personality completely changed over three years, but the saddest part was he died from mesothelioma, not really knowing any of us. He was in the Navy during WWII and a fire chief. To see his decline was more than heartbreaking.

[christinawatts]

I cried throughout this whole thing because you loose your loved one while they’re still in the house with you, what an devastating thing to have to witness.

[lorij]

Rest in peace Greg.
Sympathy to his wife Janet and family.

[enchantedapril]

My husband was diagnosed at 65. I saw subtle signs long before his diagnosis. When it was becoming more obvious, I had just completed my annual physical. My doctor asked if I had any other concerns, and I was concerned about may husband. The doctor just dismissed my worries. Six months later, I took my husband in and demanded a mental acuity test. He scored 20/30. The doctor was immediately on the phone with a neurologist and neuropsychologist. Further testing showed he scored on a battery of tests from low-normal to profoundly affected. Three years later, he scored 1/30 on the mental acuity test. He is now in memory care. I can understand only 5% of what he says. He hallucinates, and now his gait is being affected. He is 69. He was an English teacher, then a lawyer, then a CEO. He was good with words, but his speech was the one of the first things to fail.

[markrumfola]

My landlord is in the Veteran Dementia unit. We have been friends for over 50 years. He is 66 & I'm 64. I just woke up & saw this. Thank you so much. Love all of you involved.

[fortifiedgaze]

The scariest aspect of dementia is not the loss of who you are and your loved ones, but the awareness and fear knowing you will lose everything

[Catajbr]

Greg basically got what he wanted. He didn't have to live in a facility and was lucky that he escaped the horribleness of alzheimer's end stages. R.I.P. Greg. Condolences to Mrs. Kelly and family.

[terrilongden]

I worked on a dementia ward at the end of most individuals lives, I loved my patients but was a job I could not deal with watching and learning how a person used to be to this person led in front of me wasting away because their brain had wasted away and they could no longer eat or sleep, or dealing with aggressiveness because they didn't know where they were or who you was. It's horrific and the thought of this illness reduces me to tears.

[mnmdisney]

I was diagnosed at turned 52, and its never a dull moment, which is a sucker punch to the gut EVERYTIME.